09/02/2026
💙❤Warrior Wednesday❤💙
Meet Jovie! She is 15mths old with Shone's Complex.
"Our “fourth and final,” Jovie Oakes was born spontaneously on her big sister’s birthday and completed our family. Her labor and delivery were beautiful, everything I had always hoped a natural birth could be. Jovie girl was so seemingly perfect that we were discharged only 18 hours post-birth, immediately after she passed her CHD screening. We took her to her well-baby check the next morning where a pediatrician listened with a stethoscope and assured us she looked and sounded great. We headed home to celebrate our three-year-old’s belated birthday, life was great. Until it wasn’t. It was that night, just shy of 48 hours old, when we noticed something was “off”. My husband tucked our three older girls into bed and was met with unsuspecting words the second he walked into our room, “we need to take Jovie to the ER.” I had never felt my mother’s intuition so strongly, but this was something fierce. We assumed she was likely exposed to a bug while in the hospital and in trying to decide whether to take her in or not, I remember thinking - we will never regret getting her checked out even if she turns out to be just fine, but we will always regret not taking her in if something is actually wrong. We packed a quick bag and headed right back to the hospital she was just sent home from. They triaged and took us to a trauma room right away. She looked so tiny in that isolette and all I wanted to do was comfort her. When the doctor explained I could not nurse her due to the risk of aspiration, I remember feeling so confused. She’s sick…she needs antibodies, what do you mean I can’t feed her? The best thing I can do is feed her. The ONLY thing I can do is feed her. Helpless doesn’t scratch the surface of what we felt in that moment. At this point, the team explained they had narrowed it down to two possibilities: infection or cardiac. Immediately, my husband and I rejected the idea there was anything wrong with her heart. We would have known if she had an issue with her heart…wouldn’t we? They ran an infinite amount of bloodwork that night but the one level to confirm what we so desperately did not want to accept was the BNP. A normal limit is less than 100…Jovie’s limit was well over 4,000. It was at that very moment the room started spinning. My husband looked a trusted nurse, who had been with us since we were admitted, dead in his eyes and asked what we were up against. “It’s bad man. She’s really sick. It’s her heart.” The somber tone of his voice, the pained look in his eyes, we’ll never forget that sobering moment. They performed a bedside echo and the brilliant pediatric cardiologist on-call watched via FaceTime. He diagnosed Jovie with critical aortic stenosis and he ordered to start her on prostaglandins STAT to keep her PDA open, a life saving call. The ER arranged for critical care transport to a hospital capable of providing the specialized care she needed and from that moment on, all we could do was wait. We vividly remember the moment UCSF’s team swept in like angels and went to work stabilizing Jo for transport, they worked tirelessly through the night and her dad and I didn’t sleep a wink. As the sun came up, Jovie was finally transported to the NICU at UCSF Benioff Children’s Hospital Oakland where she was taken into a Cardiac Cath in an attempt to balloon her critically stenosed, unicuspid aortic valve. Two days later, on her first Easter, Jovie’s balloon valvuloplasty failed and she crashed, going into shock a second time. She was transported, yet again, to UCSF Benioff Children’s Mission Bay to undergo an emergency Ross-Konno open-heart procedure at just seven days old. As it was explained to us, this was Jovie’s only chance at survival and she had no window of time - it was now or never. Hand-in-hand but severely ill-equipped to process the reality we were about to walk into, my husband and I entered the CICU at UCSF. We knew not a single soul, yet it seemed as though every person we crossed knew exactly who our baby was. Her Ross-Konno procedure was over 12 hours long but was as successful as we could have hoped for. Her post op journey was complicated, but after 63 of the hardest days of our lives, we brought our warrior home. Little did we know, her fight was far from over. Outpatient appointments flooded our calendar but her checkups just never seemed to come with positive updates. We soon realized around every corner we turned, yet another mountain was waiting for us. Jovie was diagnosed with a series of left sided obstructions that are referred to as “Shone’s Complex”. Her diagnosis is a tough one to accept because, like most congenital heart disease, we’ll never be “out of the woods.” Jovie is looking at a lifetime of interventions to keep her heart going. In all the uncertainty, one thing we know for sure is we have never given up hope or doubted Jovie’s resilience. We know that when we feel our weakest, it’s only because we’ve given our girl all our strength to continue her fight.
Jovie’s heart is unique, but ultimately she has Shone’s Complex - a rare congenital heart disease consisting of a series of left sided obstructions. In her first year of life, she endured three open-heart surgeries, 3 cardiac caths, two CT scans, a nauseating amount of chest X-rays and just three days before her first birthday, she sustained a cardiac arrest. Despite all of this and so much more, our girl has always made her way back home, where she belongs. Jovie’s past is painful to reflect on and her future is very much uncertain, so we do our best to live in the now and celebrate the wins. Every single day with her is truly a gift and we know her purpose is far greater than we can even comprehend at this time. We could not be more proud of Jovie’s Journey!"
